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Patient to Practitioner Access: Too Much?

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It all started with emails. I bet most medical professionals felt alarmed as email communication began with patients.

Wasn’t the existing scenario suitable enough? Call the receptionist – make several attempts to get through, rattle off suitable dates, wait for that day to come around, get to the waiting room, sit, sit and then finally release that conversation that’s been swirling in your head… if that’s even possible in the allocated 15 minutes.

I’m sure some medical professionals still appreciate and stick by this scenario. I know quite a few that do.

Isn’t life short enough?

Thankfully, my pain specialist (Dr Nick Christelis), and his team have progressed further, throwing their whole practice (Vicpain) on as many social media platforms as they can. (more…)

Dr Susie Gronski: How One Artist Used Her Hurting Strings To Stitch Back Her Life

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I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.

Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!

Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.

(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)

Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.

She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.

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Encouraging Self Management

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(Written by me, the founder of {Pain}Train)

That’s easier said than done.

When I first had my accident in 2007 and literally landed in chronic pain, the last thing I expected to hear at any appointment was that I had to manage and coordinate my own treatment.

It was confusing when I was asked what treatment I thought would be best for me to try next – wasn’t the professional meant to guide me?

But a decade later I now finally realise that I was driving my pain management and it was in fact my direction and feedback – from my unique pain experience that was making the difference.

Without the patient reporting their exact experience – which we now know is unique – there’s no way to plan or move forward.

I can’t imagine the complexity a professional faces when trying to help a patient who is unable to articulate their pain experience. But I know this is the general scenario and I know this because I experienced the difficulty of remembering, talking, thinking, documenting, reporting and navigating each minute while living with chronic pain. (more…)

ADF campaign: Losing Yourself in Pain Medication

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The Alcohol & Drug Foundation (ADF) has been working to enhance awareness about the way Australians consume pain killers.

My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.

Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.

Mamamia: My experience with medication

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Mamamia_0794

It’s time we talk about the addiction killing more Australians than heroin and ice combined.

(Excerpt from mamamia.com.au. Story by Caitlin Bishop)

Soula Mantalvanos was 37 when she was sitting on a fit ball and it burst. She landed on concrete, hard.

“It was a split second. It was bone to concrete and it felt that way. I was in shock and then thought ‘I can’t move, I can’t move’. Slowly, I turned over and crawled to the carpet,” Soula told Mamamia. 

Before then, Soula walked everywhere. She lived with her partner in the heart of Collingwood, Melbourne. They would walk to see friends, walk to dinner. Soula did yoga four times a week. She could hold a shoulder stand for eight minutes.

Soula Mantalvanos. Image supplied.

“I had a full life, creating art, working as a graphic designer, travelling overseas once a year. I had no limits. Now, my life is 30 per cent of that,” she said. It’s been 10 years since the fit ball burst.

Soula went to the doctor, was given pain medication and told to come back in eight weeks if the pain wasn’t reduced. Yet it worsened.

“Nerve pain, of course, doesn’t show on X-Rays,” she said. “It took me four and a half years to receive an accurate diagnosis. The pain would come and go with no routine. I would be fantastic one minute; the next I was spasming, burning, couldn’t function.”

Soula damaged the way her pudendal nerve, which stems from the sacrum and is responsible for motor supply to the pelvic muscles, signals the brain. When she sits, drives, lifts something, or moves suddenly, the nerve creates pain signals for no reason.

“I tried Lyrica (anti-siezure medication), nerve inhibitors, Tramadol (an opioid),” Soula said. She couldn’t work. She tried lying on her stomach on the studio floor, unable complete more than 15 minutes of work at one time.

“I took anti-depressants but these lowered my mood overall. My pain levels shifted constantly, and my GP told me to increase the dose of pain medication until it felt better.”

Soula became dependent. “I shrunk as a person. The medication fogged my mind. I couldn’t cross the road. I had to activate spell check on my phone. I didn’t have the ability to think properly any more,” she said.

“The most horrific part of this was the breathing. I would wake up in the middle of the night and realise I hadn’t taken a breath in ages. I would take a huge breath and start to panic.”

Read the full story…

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Suck it up and smile – it’s holiday time!

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Yippee!! Not! It’s too hard.

I was dreading Christmas – like I usually do. And I’m dreading New Year’s eve and day – as I usually do. And even though I would regard myself as ‘experienced’ and loaded with the best treatment possible, there seems to be no way of avoiding pain during holiday time.

Suck it up!? Um…,

No!

And that word my dear readers, is how I manage this holiday time.

I’ve learned it so well now it just rrrrrrrolls off my tongue and I loooove it because it’s always there for me and it keeps me HAAAAAPPY.

Here it is again:

Noooooooo

And with that comes,

I’m sorry, I can’t do ‘that’

With the truth being, I definitely can do ‘that’ but I have chosen (well sort of voluntarily obviously as I didn’t plan this bizarre accident) not to, because I don’t want the pain levels during – and after – I do the ‘that’.

There.

But of course it isn’t so easy. There are a few sad bits that come with ‘no’. (more…)

Mark of hope?

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_ Mark of hope_Soula Mantalvanos QGW Lettered print exchangeQueenscliff Gallery & Workshop (QG&W) organised the Lettered print exchange.

A Print Exchange is when artists submit works to a set theme and they exchange each other’s work, each artist keeping a complete portfolio.

An exhibition is held and only a few of the editions are for sale.
(more…)

Help me keep this site going – annual subscriptions $3

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This chronic pain advocate could do with a little help maintaining her website.

Your $3 per year makes a huge difference and shows me you appreciate what I do.

If you’re a professional who’s given me information to add to this site, that information will remain FREE but my personal content and WorkCover related posts will require subscription.

Support my advocacy for chronic pain and injured workers – SUBSCRIBE

Drug dependency lessons from Pharma ads and my two mothers

Author:
Carrying Dog

I can’t stand TV as it hurts to sit or lie back and watch but recently, while tuning in to one of the very few shows I do watch, I caught a message from a Pharmaceutical (Pharma) advertisement about pain medication.

It made me think about my personal situation and about my two ageing mothers who are in daily pain – both drug dependent and waiting for a pill to pop out of the sky and into their weekly pill box to ‘make them better’.

It made me think about the way they’re currently trying to dodge the countless darts from the ageing process that are coming at them thick and fast – one striking occasionally, that they still somehow manage to catch and quickly tuck under a very thick carpet.

Back to the TV.

(more…)

I made a gallery

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True! Theo and I made a huge life move as many of you have read.

Our transition began over a year ago when we escaped to Tasmania to figure out how to manage life with chronic pain.

It was the best thing we did even though terrifying at the time.

In just over a year, we have spent four months in Tasmania, returned to our dear Collingwood, sold our warehouse sanctuary, removed ourselves from our main business (as it was impossible for me to do the previous design work), planned a new lifestyle, and began a new venture with the utmost faith and backing of some very dear arty friends and some special few design clients.

Again, terrifying. (more…)

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What is Pudendal Neuralgia (PN)?

Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

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